An Interview with Rodney and Holly Robinson Peete

Thursday August 23, 2012

Today's Caregiver - Mr. and Mrs. Peete, better known as Rodney Peete, NFL Football quarterback, and Holly Robinson Peete, actress, created the HollyRod Foundation to give a voice and a hand to those striving for quality of life when theirs has been diminished due to disease or disorders. Through watching Holly’s father, Matthew T. Robinson, writer, producer and actor, struggle with Parkinson’s disease, the Peetes were moved to form the foundation. After Holly and Rodney’s eldest son, RJ, was diagnosed with autism, the foundation’s mission expanded to create the HollyRod4kids initiative.

Holly and Rodney sat down recently with Editor-in-Chief Gary Barg for a wide-ranging interview about caring for one another and their loved ones, as well as those in need and their family caregivers.

Gary Barg: You started HollyRod Foundation after Holly's dad, the great Matthew Robinson, was diagnosed with Parkinson's disease. He was, of course, noted for being the first Gordon on Sesame Street and also writer and producer of The Cosby Show. Why did you start the foundation? What are its goals?

Holly Robinson Peete: The Foundation was started in 1997 when my husband, Rodney, basically told me to stop feeling sorry for myself that my dad had Parkinson's disease, but to feel blessed that we had the resources to take care of him when so many people did not. We provide physical, occupational and speech therapies and other services to families affected by Parkinson's disease that otherwise would not be able to access those services. So we are thrilled to be able to continue his legacy by helping other people with Parkinson's disease; especially since my dad has been gone, it has been eight years now. It has been really gratifying in the face of something kind of ugly and tragic, mainly my father's diagnosis. Then about ten years ago, our oldest son was diagnosed with autism. What we found, among other things, is that autism is pretty much unaffordable, much like Parkinson's. It is not covered by insurances in most cases and we wanted to help families affected by autism as well. So we have a dual mission. We started with Parkinson's, but in affect, it is all about compassionate care.

Gary Barg: You know your dad was in his mid-40s when he was diagnosed, but he continued to work actively for almost 20 years. Do you think that remaining active was healthy and helpful?

Holly Robinson Peete: Oh, I think it definitely kept him going. I have nobody else to thank but Bill Cosby who really could have let my father go on the grounds that it was just a physical grind for him to suffer from Parkinson's and keep up the schedule of a comedy writer. Mr. Cosby kept my father employed and I think that just kept the spark, the fire burning in him. Now, every time I see Mr. Cosby, I always tell him, “Thank you so much; you just gave him such a great ending and he felt such a sense of self-worth.” Mr. Cosby always says, “Listen, I was not doing him any favors. He was the funniest writer we had.” That always makes me smile.

Gary Barg: What does the Compassionate Care Program do for people living with Parkinson's and their caregivers?

Holly Robinson Peete: Oh, I think it definitely kept him going. I have nobody else to thank but Bill Cosby who really could have let my father go on the grounds that it was just a physical grind for him to suffer from Parkinson's and keep up the schedule of a comedy writer. Mr. Cosby kept my father employed and I think that just kept the spark, the fire burning in him. Now, every time I see Mr. Cosby, I always tell him, “Thank you so much; you just gave him such a great ending and he felt such a sense of self-worth.” Mr. Cosby always says, “Listen, I was not doing him any favors. He was the funniest writer we had.” That always makes me smile.

Gary Barg: What does the Compassionate Care Program do for people living with Parkinson's and their caregivers?

Holly Robinson Peete: The Compassionate Care Program for Parkinson's is located at the University of Southern California. It is really lovely because we are able to provide services, especially in an area that is underserved, to be seen by a really good neurologist, to have exercise in their life. Studies have proved time and time again that exercise is really the key to alleviate symptoms and to hold symptoms back. We have occupational and speech therapies as well and we do caregiver respite care. We will pay to have caregivers go to get a massage or a salon treatment, or just something so that they can have some time off. That is so key, because the caregivers are just the glue that holds it all together.

Gary Barg: Rodney, you and Holly have really created a vital personal and professional relationship, but many times we men have a real hard time with caregiving. What challenges did you face when you first dealt with family caregiving?

Rodney Peete: First of all, in dealing with Parkinson's, I did not really know what it was. So to have it affect Holly's dad like it did, what I tried to do is to educate myself as much as possible. From my background, it was the exercise and the health part of it. Keeping yourself moving was something that I knew was right. I did not know how much of an impact it would have. So as we got into caring for her dad, especially once he moved in with us; we got him on an exercise bike and a treadmill. Opening up the Compassionate Care Program really allowed me to understand the impact that exercise could have and what I could do as a caregiver; and the impact I could have just by being there and communicating with Holly's dad and being in his space, talking and interacting with him on a regular basis.

Gary Barg: How important was relating with other family members going through what you were going through?
Holly Robinson Peete: It was very important to relate to them, especially when it comes to autism. There was a lot of denial and a lot of educating we had to do with our other family members about both Parkinson's and autism. We were all learning. When my dad was diagnosed, it was in the 80s. We had not yet seen Muhammad Ali and Michael J. Fox and people like that come out and really give us this face and this positive element to what Parkinson's was. We had to learn a lot on our own and share all that information with our families and with our loved ones and get them onboard. With autism, it is quite different because there is a lot of stigma. There are a lot of things that we still do not understand. We understand a lot more about Parkinson's than we do about autism and there was a level of denial that we had to deal with, with some family members, and that did pose some issues, I think that it is fair to say.
Rodney Peete: Yes, there is a level of denial with your immediate family, with parents, with Holly, and more so me in terms of autism. Unless you educate yourself, people can tend to stay away, and that includes family members. So you have got to take the scare away and really try to help educate folks on what exactly is going on and how to help, rather than hurt the situation.

Gary Barg: Take the scare away; I really like that emotion, because that is what happens. A lot of times people do stay away because it frightens them or they do not know how to respond to you, or they do not know how to help.

Holly Robinson Peete: Yes, they do not. Only our oldest kids got a real chance to be with my father and to know him a little bit, but he was pretty steeped into the dementia phase of Parkinson's by the time they were born. They would ask about why Granddad never smiles, and I had to explain to them Granddad is smiling on the inside a lot, but he has this mask that comes with Parkinson's disease that makes it look like he has no expression. It scared the kids sometimes, so we really had to stay on them to know that Granddad is smiling on the inside. Just because he is not smiling does not mean that you cannot smile at him.

Gary Barg: What would be the one most important piece of advice you would like to leave a family caregiver with?

Holly Robinson Peete: A family caregiver experiences a certain level of guilt, a certain level of selflessness, and I would just say you have to take care of yourself. You cannot feel bad about giving yourself some time. You have got to have some time to nurture your own soul, because if you do not, you cannot be the best caregiver. Not taking care of yourself is the worst thing that you can do. So in some way, some form you have to give yourself a break and nurture yourself so that you can nurture your loved one as well.
Rodney Peete: That is it, because you get so consumed. I know that because not only have we been going through it, but I look at my parents who have done that for my grandmother and my grandfather and some other people in our lives. They spend all their time looking after some of the older generation and do not really take time for themselves, which makes them worn out. So you have to take time for yourself, and really take care of yourself health-wise, and give yourself some time and give yourself a break. I think the other thing I would say is no matter if you never hear it or you do not see it or you do not think it is there, you are appreciated and the people that you are caring for really appreciate you. I do not think that you should ever underestimate that or think that it is not true; because even if they do not say it, like I said, you are appreciated.